question for sailing muffin

Hey sailingmuffin,

I am going to have a spinal cord stimulator installed and i was wondering 1. how is that going for you? and 2. Where are the leads placed on your stimulator? 3. Are there any dangers involved i.e leads slipping and possible accidents where the leads can pierce the spinal cord?

Thanks for your response,

Finn

Hi,

My occipital nerve stimulator was originally placed in June 2004 at Jefferson in Philadelphia. It was in the trial stage then, but, due to the fact that I lived far away, I opted out of the trial. For the first 8 months, I experienced a period of remission- basically, my headaches went from being daily to two to three times a week. Medication to control the headache also worked-noothing would stop them before.

For me, it has been a Godsend. I do much better with it than without it.

Did nerve blocks help you? I had previously had radiofrequency blocks to c2-c3, which did help and that was one reason that the doctor suggested the stimulator. I also had a ten day trial of a temporary stimulator before the original was implanted.

I have had to replace the leads though.
This first time, the right lead simlpy broke. I had surgery to correct it and it no longer stopped them completelu, but does allow medicine to work, which is great.

In 2007, The extension whenere the wires meet in my shoulder broke and so that was replaced.

In 2010, I broke both leads while fainting. This time, instead of repairing it, they basically replaced it and it has been working veery well ever since.

All of my revisions, except the one in 2005, were done by the same dr who originally put it in. He is one of the drs who pioneered the device.

The leads are located in the back of my head, going from the top of the skull, the wires meet in the right shoulder and then do down to a battery in my hip. The new rechargeable The dangers are there- as they would be with anything. But i am very glad that I have it.

If you like, I will send a PM with the name of the doctor who has really helped.

I hope this helps,

Pain free days,
sailingm

Finn - There is a facebook page about this with tons and tons of information. It hasn't been there long, but there are lots of posts and stories of people who have had the surgery.

If you go on facebook and search occipital nerve stimulation, it will come up. You will have to request to be on the page but they got back to me very quickly. If you go back through the old posts, you'll find lots of info on recovery, results, etc.

I am waiting to hear from my insurance company as to whether or not it will be covered and hopefully will be having the implant surgery also. Good luck.

-Cathy

sm-Where is your pain located on your head? Some doctors are now doing these nerve stims with frontal leads, either in addition to or instead of the occipital ones. Often supraorbital, but sometimes temporal. Lead location in part depends on headache location on the head, but some folks with front pain benefit from the added back leads. I'm quite interested to trial this but haven't found the right doctor yet. The pain specialist I'm currently seeing does these, but seems to like to see a positive response to a block before even doing the trial (which goes against most doctor's current thoughts). I failed a supraorbital block but am anxious to try temporal since my headache seems closer to there. Are you able to quantify how much relief you are getting on average from this currently? Thanks for sharing! Best wishes.

Hi,


My headache actually encompasses my entire head. It isn't one sided or in one place. I believe the leads were done in the back because I had a very good reaction to radiofrequency to the neck.

It gives a good amount of relief and it does let medication to break a headache work. Before the stimulator only massive doses of pain medication and steroids would touch the headache. Now, it can be brought down with either depakan or steroids and medicine works.

I think nerve blocks are a good thing to try first. Also, if you do the trial, make sure the dr has done several of these before and had good results. Not many are up on the occipital stimulators. Many drs I have encountered have never seen an occipital stimulator before. It is very helpful for me.

Pain free days,
sailingm